Saturday 12th September 2015

Saturday September 12th 2015

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Leo had a good morning yesterday and seemed happy with all the visitors and gifts, thank you for those who came. Unfortunately in the afternoon he began having convulsions again which started occurring more frequently and still continued even with diazepam, at about 1130pm at night they took him for an emergency scan and we had to wait hours to speak to the neurosurgeon to find out what was happening. The neurosurgeon advised us that there was inflammation in two places on the right side of his head (opposite the tumour removal) he said it could just be inflammation and a small bleed but there was a possibility as the cancer was so aggressive that it could have spread and it could be more cancer.

The doctors moved him back to intensive care under close monitoring. We were so shocked, maybe the doctors had moved him back to the normal ward too early. He was only back 1.5 nights and then back to intensive care. We felt although we had gone 1 step forward and 2 back. They have stabilised the convulsions a bit now and he was a bit more relaxed. We were try tying to be optimistic that it is just inflammation as he had undergone such a complex op but it was hard news to hear just as we are beginning to comprehend everything that had happened. The only way to know what this inflammation is from an MRI scan and they don’t do them on Sundays!

We went outside for a walk to try to understand that our baby might still have more cancer, it was so unfair. We thought he had got through the hardest part but it seemed now that he might have more bigger battles to fight. We were praying that the following day we could have the MRI scan done to him and the results of the biopsy to finally get some clear answers. They told us that if he continues to have bad convulsions they will put him into a coma but this is a last resort. Feels like an emotional roller coaster for us all at the moment, and like we are in a giant tornado that we can not escape from.

Last night I saw a dad with his 2 year old boy screaming in reception and he was smacking him so hard and screaming at him. I was thinking he doesn’t realize how lucky he is I would kill for Leo to be screaming and shouting! We are trying to hold our faith but I cannot believe that god could do something so cruel to such a young an innocent little boy who can be a little devil sometimes but is one of the most caring and loving little boys in the the world. ( known at the nursery as the boy with the big brown eyes) .

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